Tuesday, February 1, 2011

Meeting My New Daughter

On Thursday, January 27, the night before my flight to Birmingham, Alabama, Will gave me a priesthood blessing in which I was promised that I would be able to clearly understand the medical terminology that the doctors would use to explain Daphne’s condition. I was also promised that this understanding would help me to make the right decisions about her medical treatment. This was a very comforting promise, especially since all I knew at that moment was the name of Daphne’s diagnosis: pulmonary atresia.

When my dad learned about Daphne’s heart defect, he contacted Dr. Edward Clark (chairman of the department of pediatrics at the University of Utah and medical director at Primary Children’s Medical Center), who he knew through his work with the American Heart Association, to find out if he had any advice for me regarding Daphne’s condition. Several years ago, Dr. Clark co-authored a book called The Heart of a Child, written specifically for parents of children with heart defects. The book reviews the normal anatomy of the heart, provides an overview of different heart defects, and explains the history and application of various surgical procedures. Dr. Clark set aside a copy for me, and my mom picked it up and delivered it to me before I left for the airport.I devoted my travel time on Friday to studying this book, focusing on the sections relating to Daphne’s diagnosis of pulmonary atresia. As I studied the illustrations of the heart and read the pertinent explanations, I found it surprisingly easy to understand Daphne’s condition and come up with specific questions for the doctors in Alabama. Right away, I began to see the fulfillment of the promises I had been given in my blessing.

I boarded my first flight from Salt Lake City to Phoenix at 12:10 p.m. on Friday, January 28. The flight was uneventful. I sat next to two nurses who reminded me how fortunate I am to live near Primary Children’s Medical Center, where they have the expert staff and resources to monitor and treat Daphne’s heart condition. That truly is an incredible blessing.

My layover in Phoenix was supposed to be 1½ hours, but at the last minute, my flight was delayed another 2 hours. I was extremely disappointed and worried. I began to panic, because I still hadn’t been able to reach my contact at the hospital, and I didn’t know what to expect upon arrival. Would the staff be expecting me? Would they accept me as the adoptive mother? Our adoption agency had assured me that the hospital was expecting me and that I would be able to sleep in Daphne’s room with her, but I was skeptical. I couldn’t imagine a NICU with such lenient visiting hours or such generous accommodations. To calm my fears, I decided to call the hospital again and simply ask for the nurse caring for “Baby Girl O” (at the hospital Daphne is registered under her birth mom’s last name).

The woman who answered my call was named Regina. She updated me on Daphne’s status, saying that she was a very good baby and had been eating well. She also confirmed that the NICU would be expecting me, no matter what time I arrived, and that I would be allowed to stay with Daphne during the night. Speaking to her was so comforting that I was overcome with gratitude and couldn’t speak without crying. I thanked her for taking such good care of my daughter and said goodbye.

One of my biggest concerns about traveling to Alabama without Will was that I wouldn’t have a priesthood holder with me to give Daphne a blessing. Before I left, my dear friend Janette contacted her grandmother, a former resident of Birmingham, to obtain the name of a priesthood holder who lived near the hospital. During my extended layover, I called this man, Reid Giles, explained Daphne’s heart condition, and asked if he would come give her a blessing sometime over the weekend. He kindly agreed to come and told me to call as soon as I knew when the hospital would allow him to visit. As I hung up, I felt extremely grateful that the priesthood power is the same no matter where you go and that someone would be able to bless my baby, even if her daddy couldn’t be there.

The flight from Phoenix to Birmingham seemed unbearably long, even though it lasted under 3 hours. During the flight, I frantically studied Dr. Clark’s book, hoping to find peace and comfort by obtaining more knowledge. When I stepped off the plane, I became increasingly anxious, filled with equal parts excitement and apprehension. I was so close to my daughter, but the next part of the journey would require me to be self-sufficient and confident, qualities I don’t naturally possess.

After collecting my luggage, I found a taxi and headed to the University of Alabama Birmingham Women & Infants Center (UAB). Following the instructions I had been given, I went to the third floor, pushed the intercom button, and explained that I was the mother of “Baby Girl O.” I had to walk past Daphne’s room to sign in at the reception desk. That was painfully difficult. How much longer would they keep me from her? How much paperwork would I have to complete?

When I reached the reception desk, a young woman named Heather welcomed me with a bright smile, picked up a few papers, and said, “You can fill these out later. Would you like to go see your daughter now?” No delay; no paperwork. I could see her that very minute!

The first moment I saw Daphne, she was sleeping peacefully in a clear, enclosed incubator. I stood on the right side of her bed with my hands clasped in front of me, anxious to touch her but stopped by transparent walls. “She’s so beautiful and so tiny!” I exclaimed. Daphne’s nurse Kendall had joined us, and she and Heather both chuckled. Many of the other babies in the NICU were under 3 pounds, so at 4 lb. 12 oz. (Daphne’s weight on that night), Daphne seemed like a large baby to them. But she looked so small, lying naked on her white and blue hospital blanket.

As I began to cry with tears of joy and gratitude, Kendall asked if I wanted to hold Daphne. I was elated! From the looks of her incubator, I had assumed that wouldn’t be possible. But apparently, the lid was lowered only to keep in the warmth. Daphne was perfectly stable, and I would be allowed to hold her all night if I wanted to—which I did (except for 3 hours when I slept on the couch just a few feet away). Kendall and Heather snapped photos of me holding Daphne and even printed a few to hang in her room. They brought me a pillow and blankets, in case I wanted to sleep, and then they left me to enjoy my baby girl. I snuggled her from 10:30 p.m. to 2:00 a.m., when I finally became so exhausted I didn’t trust myself not to drop her. I woke at 5:00 a.m. and picked her right back up. I couldn’t get enough of her, and I didn’t want to let her go.

photoMy first photo with Daphne Jane Gainer, taken just minutes after my arrival at UAB.

1 comment:

Daphne Jane Gainer

A Brief, Beautiful Life

Daphne Jane Gainer was born on January 20, 2011, in Birmingham, Alabama. She was adopted one week later by Will and Rachel Gainer, residents of Salt Lake City, Utah.

Hours after birth, Daphne was diagnosed with a congenital heart defect (CHD) known as pulmonary atresia, which prevents blood from returning to the lungs to receive fresh oxygen and results in a severely underdeveloped right ventricle.

Living with just half a heart, Daphne spent all but three days of her life either in the hospital or on supplemental oxygen. She endured three extended hospital stays, two heart surgeries, one heart catheterization, and countless needle pricks, blood draws, and other tests.

Daphne passed away on March 18, 2011, just hours after undergoing her second heart surgery. Her life on earth lasted just 58 days, but it was both miraculous and inspiring.

This blog is maintained by Daphne's mother, Rachel Gainer. It celebrates Daphne's life, explores the realities of grief, and affirms that death is not the end and families can be together forever.